Thursday, August 20, 2009

Sleeping so sound w/out BiPAP: #SMA

Usually we only get to see Emily sleeping with her BiPAP on. Such a
sweet face - so peaceful.

Sent from my iPhone :: Peace <><

Tuesday, August 18, 2009

A couple days of being home #SMA

We're home and having a good time. Emily is no longer on extra O2 and we're getting back to business as usual. Phew! The Zyrtec dose discovery was an important one for us and other's that deal with respiratory issues like ours. Also, if you're wondering what our home is like after these bouts of sickness, to the left you see a little window into our lives. Kids Monopoly all 'round! Just hanging out before bedtime. Don't you wish YOU were here playing children's monopoly?!

Anyway, we've got some Dr. appointments coming up and probably a sleep study and an MRI -- plans plans -- always with the plans.

Thanks for your thoughts and prayers and for the meals we have been getting from friends. Meals are SOOOO great when returning from the hospital. :)

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Sunday, August 16, 2009

Going home. #SMA #PICU

But there's still work to do.

Still here. #SMA #PICU

So we're still here and hangin out. We've made some changes to Emily's meds which is interesting -- 4 days ago we increased her Zyrtec dose, per Dr. order, and feel that the increase thickened her secretions causing low satting and respiratory difficulty. When you KNOW there is junk in there it is frustrating when you can't get it out. So, now her secretions have thinned and are flowing more freely - and we are getting plugs out so that is good. However, now she has a higher heart rate and low sats while we work the junk from her lungs. We're also adding Singulair allergy med and switched from Flovent to Pulmacort
nebulizers.

Anyway, now we're not sure if we should go home today. While we wait and work, here's a pic of Diana, Emily, and nurse Christy.

Saturday, August 15, 2009

Hangin in there: #SMA #PICU

So all of Emily's labs have come back negative so far so we've ruled out major issues like RSV or Flu, but we're still dealing with a "sticky" situation - like her secretions clog the suction catheters
kind of sticky. She pretty happy and all, but still with the coughing and all... Not fun. Who knows what this is but we'll get through it I am sure, b/c her animals are keeping her company when we sit down to rest. :) >> thanks for your thoughts and prayers.

Remembering Linnea Grace #SMA

We are thinking of Linnea today. She would be 6!!

Friday, August 14, 2009

Admitted to Sinai PICU - #SMA

We've admitted Emily to the Sinai PICU b/c she is on 2L of supplemental O2 and will not come off her BiPAP accept to cough, which is very frequent at this point. :/ Otherwise her hear rate and attitude is quite normal - except when her foot is being squeezed for blood (see picture). We'll see how things go. We're as "excited" as we can be to return to Sinai b/c they are great and that makes us comfortable. (I'll be updating via Twitter as well - Twitter.com/natedlee)

Sick again #SMA

Hey everyone -- my how this Summer is flying by. Goodness! School is starting up again soon and we'll be getting back into the swing of things.

I started this post to give a longer update, but the important thing for you to know is that Emily has been sick for a week and we are considering admitting her to the PICU today b/c she will not come off BiPAP now. :/ She's had a nagging cough and a lot of secretions. Her heart rate has been good and her spirits have been up, but she is just so congested it's not even funny. Cough after cough after cough. Poor Emily. So, we're making our phone calls and plan on taking advantage of our Golden Ticket status, so we get to skip the ED and head straight to the PICU at Sinai Hospital.

Please keep her in your prayers - hopefully it will be a short stay. I'll let you know if things change one way or another.

Peace <><

Saturday, August 01, 2009

Daddy-daughter time. :) #SMA

Sent from my iPhone :: Peace <><